Third session out of 4 due to start next week. First round of Chemo quite eventful as had to have blood transfusion and was admitted because of high temperature though no infection found anywhere. Second more tolerable as I knew what to expect, I could ward off the nausea with tablets and never letting my stomach get to empty helped with the dry retching. I have had problems with back pain all through, the pain in the area of my right groin where there is a tumour has gone and on recent examination by Registrar he could not detect any swelling or anything concerning. If he had I would have had a scan before further treatment. Letter arrived yesterday from an appointment after first chemo which has worried me as it said the pain I was having in my right buttock and back was due to bone mets and spread into the muscle. This was not mentioned after the scan I had. I am now worried that the chemo may be working well on my tumour but what if the mets are increasing in my back. On the plus side when I was admitted and investigated for a chest infection I had a CT which I am told showed a big reduction in the nodules in my lungs and an ultrasound of my groin area did not detect anything wrong at all. This was done in Hull where I was admitted though I am having treatment in Leeds. The Leeds team said it was too soon for a progress update so not to read to much into those findings. I know my tumour markers are going down and I will be having an end of treatment scan in January. Will be difficult to get through Christmas without worrying if I still have this back pain, I am on morphine with paracetamol but very rarely totally pain free. Trying to be more active in case sitting to much is making it worse. What will I do if these flipping bone mets are still there, what else will be offered. One Registrar did say back pain may just be a side effect of the aggressive chemo. I'm on Carboplatin, Etoposide and Bleomycin.
Hi Jkg
Good to hear from you. It sounds as though you are worrying about a lot of things. I think you're doing great as just dealing with the chemo is hard enough. I know it's easy for me to say but just try to concentrate on where you're at now without rushing ahead. It may be worth ringing your CNS/specialist nurse and asking her to clarify things. If she's not sure, ask her to find out for you. My specialist nurse works across 2 hospital sites and I have been seen by her at both. They have your notes and the contacts to be able to make sense of the conflicting information that you've been getting.
My understanding of chemo is that it is targeted to the person's type of cancer. So i don't know for definite but I don't see why it would work in one area of the body but not in others. When I was having chemo, the middle week after the second cycle I had 5 sessions of radiotherapy to bone mets in left hip. This was because my walking was so bad. I was limping badly and this was affecting my back so much that I bought a walking stick for support. It was later found on CT that my hip had fractured as a result of the cancer.
I think you are doing really well in coping with everything and that the information from 2 hospitals is confusing matters. Try not to worry and trust your cancer team. Hope your chemo goes ok next week.
A x
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